My thoughts, and opinions on many subjects. But it's always a mad world.

Updating Tuesdays, and Saturdays, with a video blog the last Thursday of each month (Most of the time anyway). On Sunday I roll over, and go back to sleep.

So Who is Amanda Harper?

Well to start with I'm obviously a writer, though of everything from very alternative romances to crime dramas.

I'm a lesbian, trans-woman in her 30's, who is very much into her royal blue hair (now purple), velvet and leather filled wardrobe and of course my oversized shit kicking goth boots. Oh, and I'm a hardcore PC, and tabletop gamer.

In this blog I want to hit on subjects that I don't have another medium for. Expect reviews of games old and new, though mostly old. Expect rants about the world in general. Expect the occasional lapse into convoluted personal philosophy. Oh and definitely expect some stuff on BDSM, after all I was a professional dominatrix for a few years and enjoy the BDSM lifestyle in my private life now.

So I hope you enjoy the randomness of my ruminations, and let the madness commence.

(Please feel absolutely welcome to comment on any and all of my posts. I have only three rules...
1: avoid Godwins rule.
2: avoid bad language.
3: I'm not here to provide free advertising to commercial websites, comment if you wish but I will edit out links post to such sites.
Other than that enjoy yourself, and please feel free to have a pretty signature.)

Being a friend to the owner of Angry Bowel Pixies.

I’ve written before on coping with a chronic bowel illness, and helping those around you to understand what you’re going through. Today I want to talk about being a good friend, or partner to someone in that situation. I dare say a lot of people will read that last sentence, and roll their eyes. After all they’ve been friends with someone chronically ill for years. They know what they’re doing. They know how to be a good friend to that person. And they probably do.

So while I hope that those people will still read this article, and possibly gain something from it, this piece is far more aimed at those who have just become the friend or partner of someone with a severe illness. I hope to give those people some small insight in to how to approach this subject which I have so rarely seen dealt with. So below are my tips for having a good friendship or even partnership with a sickly individual.

1. If you ask how they feel, and they are honest about it, try to make sure you don’t make them feel bad afterwards for being honest. It’s hard for anyone to allow themselves to be vulnerable. For someone who is sick all the time it can be far harder. So when your friend is totally honest about how bad they might be feeling at that time take it for what it is. Proof that they trust you enough to be vulnerable with you. Try not to make them feel worse by even accidentally throwing it back in their faces later.

2. If they have any odd dietary requirements try to have an idea of what they can’t eat before you book a table anywhere. This one’s probably pretty self-explanatory, this way at least you can ask the restaurant if they cater for someone with that food allergy. If they don’t just contact your friend, and try to work out an alternative.

3. Try to plan activities that take their physical condition into account. Another self-explanatory one, I hope at least. A days shopping is welcomed I think by most (though not all) women, but walking from shop to shop for hours may simply not be physically possible for your friend. Try to plan out coffee stops, or something similar to let them catch their breath.

4. When they cancel some long laid plans at the last moment be understanding. They didn’t want to cancel. They wanted to spend time with you. It’s possible, maybe even probable that as soon as they hung up the phone they cried from frustration. Being ill in this way means that sometimes you just can’t make it. The plans might have only been for coffee a couple of minutes away. But those couple of minutes to you, could represent running a marathon with no training at all, to your friend.

5. Some illnesses have unpleasant side effects, help your friend with them. I’ll use my stomach as an example here. I have accidents. Not often, but they do happen. And sometimes I don’t notice at all. If you’re truly a friend, and you notice you’ll mention it to your friend. Quietly, without drama, without causing any fuss. Well lots of illnesses have similar side effects. Be a hero, and help your friend to not be humiliated.

6. One for the lovers now. Sometimes (I’m aware that this is dangerous ground I’m treading here.) with a chronically ill person “I don’t want to!” can actually mean “I physically can’t.”. So discuss things, in plain language so as to avoid misunderstandings.

Let’s use an example here, and let’s be plain, and simple about it, let’s talk about anal. Anal rocks. It’s often a wonderful addition to a healthy sex life. But no matter how much you might love it, if someone has a chronic bowel problem they very probably simply can’t do it. No matter how much they might want to. So instead of hearing a simple “No!”, politely, lovingly ask your partner “Why?”. Don’t find yourself stewing, festering, resenting, and potentially hurting a perfectly good relationship.

7. If your friend is housebound a lot of the time encourage them to go out, and do things. But, and this is important, don’t be really pushy about it. You want them to know that if they want to, and can get out on that particular day, that you would like their company. On the other hand if you’re too pushy it’ll start to feel like you’re obliging them to go out, even if they aren’t well enough to. It’s a fine line I know, but if you’re aware the line exists it can be easier to find it.

8. Don’t talk about their health all the time. Okay, now this one’s a little odd to explain, so bear with me. People who are ill can often hate talking about how they feel, their treatments, doctors, etc. But because often there isn’t much else going on in their lives it’s all they have to talk about. Add that to well-meaning friends who just want to lend a willing sounding board, and you can find yourself with an unending conversation that drives everyone nuts by the end. Yes, do talk with your friend, or partner about their health. But make sure you also talk about other things as well, even if only to remind them that someday they may be well enough to truly rejoin the world, and that it’s a day worth fighting for.

9. If you can go with them, and if they want you to, go to the hospital. No matter how many times they’ve gone before, hospitals are intimidating places, they’re also boring as hell, and someone to chat with in the waiting room is only a good thing. But more than that, hospitals are where people with chronic illnesses often only ever hear bad news, and sometimes they’ll need a shoulder to cry on immediately afterwards. Try to give them that.

Finally, for now, the most important thing you can do for your friend, or love if they live in this kind of situation is…

10. Tell them that you love them. Really obvious, huh? Well actually yes, and no. You should tell people you love that they are loved anyway. It’s important to feel loved. But for someone who is trapped by their body, by their health, who doesn’t necessarily see many, or even any people most days, it matters even more. When you’re trapped at home for day after day, it’s easy to feel cut off from the world. It’s also easy to feel forgotten, unloved, unwanted. Three little words can take the worst day they’ve ever had, and if not make it better, at the very least make it bearable for a little while longer.

4 Comments to “Being a friend to the owner of Angry Bowel Pixies.”

Would I be right in interpreting point 8 as, “Let the person with the condition decide when that topic is a go or a no-go topic”.

Basically, with my set of seriously minor conditions, I tend not to like when people want to talk about them apropos of nothing. If there’s a reason (in your case like arranging food or going out somewhere), then that’s fine. But otherwise, I may squirm a little.

Seeing as I’m a big believer of treating people as I’d like to be treated in that situation; I tend to stay quiet about it, but not run away when the topic is raised, or the space is made for it.

Is that an approach that works for you (in the limited amount of time we see each other*)?

That’s a very good way of putting it. Though I would also add that if your friend seems to have dropped into an obsession spiral, where talking about how bad they feel seems to be all they do you should steer the conversation elsewhere. You know, let them have their say, but don’t let it become the focus of every conversation. Simply because it can lead to a lot more stress for both people in the long run.

And yup we really, REALLY need to fix that particular situation. But I’ll be living 5 meters from a no.66 bus stop in a fortnite so getting ot town, and being sociable will be something I can actually do then. Or that can of course be reversed, I have after all an impressive DVD collection, and Subway across the street…

Thanks for sharing this-I really identify with these pointers…but not so much the second part of no. 6-hee hee). I’m not open enough about my illness with family, certain friends, aquaintances (apart from you and a few special people, who are just geographically unfortunately not near me!) and no-one at work knows. Often having ongoing chronic illness is forgotten (like silly ignorant me forgetting about you the other day, with my thoughtless comment on fb-so sorry about that-I was very flippant and had actually forgotten about your illness at that moment!). With me, after my last admission 3 years ago, once I was back at work, people think you are better and forget that the illness is still there, but better under control, but it still lingers-it is not like a broken leg! I mentioned to a pal a few months ago how I was struggling and just barely keeping things together and they automatically jumped to thinking a hospital admission-whereas I was no way near that state at all-I just needed to work on other areas and get balance again. My family have no idea why somedays I don’t answer my phone or can’t come up to Dublin…they just think I am busy or don’t care and ignoring them. And they don’t want to know about my health-they don’t understand and I feel I can’t be honest with them. I can’t be honest with people, because I feel like a burden and they just feel like saying ‘cop-on and get on with it’. But we can’t always start doing that. But I want to start being honest…not in a bad way, but more in an informative way, so I am so glad you shared these pointers…I really am! Giving me the confidence to stand up for myself, you and those of us with chronic illness.

For me, I find for a healthy mind, a healthy body, that it is vital to get out of the house and do even a little exercise everyday (this may be just 5 or 10 mins). I think it is good to get the blood flow to the organs and brain and get the endorphins going and get out of the rut that hanging around the home can bring-I have to be mindful of this now with part time working even more. I know how different that can be with bowel issues as I guess in your case, you need to make sure you know where the restrooms are, so don’t go too far away. Even if I am feeling rotten, having a terrible day-I still can probably go for a 5 minute walk/light jog-so I do it (well most of the time!!). But this minimum is different for different for different people…..so see what you can do…even if it is something small…although you may alreay be doing this. Hope the house move goes well. I am in Meath/Kildare Tuesday, so let me know if you fancy a visit and I’ll prob have Kali and Sam with me too. Xx

*hugs* It took me years to be honest about how I felt withthe people around me too. It’s a scary thing to admit that you’re body keep betraying you. But if the people who love you don’t know whats going on, they can’t adjust plans or expectations. Regardless you know I’ve always loved you even knowing everything I do about you, so maybe that will help make it a teeeeny bit less scary as well. And I’m glad this post helped.

I exercise most days. That’s why I have an exercise bike, which is right next to the bathroom door. In fact it’s going to be inside the bathroom at our new place. And it definitely helps. And I do take Winer for a wander, even if it’s only just walking slowly up to the canal, then sitting down on the bank and letting her run herself ragged.

It would be great to see you, I miss my Kitty. Just so you know dogwise, Winter is in heat, so…